I’ve been thinking about what I wanted to write about next… The other day driving home from a great peaceful chilled day at the zoo I thought of the song it’s a great day to be alive and you know what no matter what it is… becuase the alternative doesnt bear thinking about….
I will give my medical update…First, I have no idea about my blood levels. I was tested today for the first time in a month the longest I have ever gone in 3 years. When I left the hospital today after about 9 hours of being there, my results weren’t back yet. I realised though it doesn’t matter in the grand scheme of things. Its a number I feel okay so for now we will go with that. I have a nasty chest infection but am on antibiotics so fingers crossed it clears without me needing IV antibiotics. That is a fear that I do hold but so far no fever. I wheeze but I suppose I don’t do much physical activity so I don’t notice it so much. Though don’t make me laugh too much or that can send me into a coughing frenzy…. I have an inhaler and was told to use it more.
Going to the hospital once a month has made a huge difference to our family time for the best. We realised my limit is a few hours out and about and that I really struggle when I cant rest my feet off the ground. My eye sight isn’t great in bright lights but it could be a lot worse. This is most likely a result of the steriods but the benefits of the steriods out weigh the negatives at this point.
We have created an adapated family fun list. Though we don’t want to call it a bucket list as that means when its done I’m done or if we don’t do something then we ran out of time. Instead its a list of accessible activities we could do. So any ideas are more then welcome. We really need some creative ways to do an indoor camping experience as that is a real passion of Mand’s and mine that I would love to share with the girls. I have to see them eat their first smore and cook a hot dog though I can’t be near a bbq or open fire due to smoke. We will sort it though. We also love vouchers and deals so that leads our activities as well. I have realised I can be in the car for about an hour before my leg pain begins. We make everything an adventure. Everything gets hyped up from the mundane of Bramble getting his fur trimmed to going to the zoo. We make I spy lists or lists of what they want to see. They get so excited planning the day and love family date days. The girls love when we name the activites. We realise how blessed we are to make these memories and have these experiences. Lily and Emma are at such an inquistive age and seeing the exciting to the mundane through the eyes is a true gift. We tend to stay put on weekends as I have no immune system and it gives me some needed sofa time and the girls time to just be. We have dance classes on Monday well Lily and Emma do. It is such a joy to watch. On a Wednesday I am at my creative therapy group. So we try to plan activites around these allowing me time for rest and recovery. So for those worried I am doing to much I have finally embraced my limitations and found a way to celebrate rather then be frustrated. I have learned to embrace my wheelchair and accept that by going in it and being pushed we can do more. Depending on what we do we need an extra pair of hands to help with the girls but thankfully we have a lot of people willing to join our adventures and the girls are really good. We are truly blessed to spend so much time togther as a family and with those we love…. we do not take it for granted.
I do want to reach out to Ellen again and say just so you know I’m still here…. still going …. so please don’t forget about me. Though if I don’t skype her or hear from her I am still so beyond amazed at what I have been able to accomplish from such a silly dream. It really spurred me on in a way I didn’t think possible. That said I still want a chance to fully thank her for the hope she has provided me. We just saw Finding Dory and once again feel in love with the underlying themes…. just keep swimming…. that family is beyond just blood but those who love you and care about you…. and you will never be forgotten. What a wonderful world was in the film and the girls call that our family song and the garden song as I have been singing it to them since they were born.
A friend asked me when I am 100 and no lonnger here can they still post selfies with my big head and take me on adventures. I said yes please. I want to see it all and its a way for my girls to see that life continues after someone you love dies…. and that life is still meant to be embraced, enjoyed and lived. So I’m thinking it could be like a Flat Sandra instead of flat Stanley or a where is the world is Sandra Bilotta instead of where in the world is Carmen Sandigo. The girls will have their little pots of glitter to spread so Momma will be able to see as she is soaring above the clouds. But I am giving permission to keep my memeory alive and bring me along in anyway you want or see fit….. whether in your heart or….. even my head on a stick. I think the idea is awesome.
So what is next…. who knows I had a full dairy for August and then looked at September and there was nothing…. I had a good cry becuase it felt like that meant my life was over… then I gave myself a pep talk and we started making plans.Yes they may not happen but what harm does it do to plan ahead. I guess underlying everything is the anxiety and I suppose fear that at any moment my body could tell me enough is enough. I try so hard not to think about this fact but I suppose that is my reality. However, I hide it well I smile and cherish and plan. I even have a resturant list as I love my food what can I say.
So September is getting full and that makes me content. So I suppose I have again a new lease on life… I realise the steriods are a huge help but I’d like to think my super heros nija cells are doing their best to beat the luekemia cells kinda like pacman. I also think all the people family, friends, friends of friends, strangers and people in general sending me positive vibes, prayers, thoughts of love makes a huge difference. I am humbled by the amount of people who care. If you all realised how low of a self esteem I had before and how low I felt people thought of me you would be shocked. I am still amazed at the comments I recieve and often wonder who people are speaking of when they speak of me.
Please know to me Im me… dealing with what I have been dealt as best I can. I put it down to my upbringing and am beyond thankful for the way I was raised and taught how to deal with life. I have had amazing role models and am blessed to say though I may have had a low self image it had nothing to do with the fan club I grew up around. My parents are my biggest fans… I like to envision my dad telling everyone thats my daughter as he watches me live my life from above. My mom is my biggest fan and does tell everyone thats my daughter slightly obnxious but I have taken her example and do the same with our girls and they beam with pride. Also, being the youngest I had a huge amout of love and support from a crazy, loving functional ….dysfunctional family and friends. I cant express in words what you all mean to me and how your thoughts touch my heart. I feel surrounded by love and supported in a way I never knew.
All I can say is don’t hold back if you love someone tell them…. appreciate who is in your life. People come into our lives for various reasons and we may never know why but there is a reason and a purpose. Communicate, Share, embrace, hug, love, live… and most importantly always always just keep swimming…. that makes you a surviour no matter the outcome…. that makes you a fighter…. that makes you be alive….. Believe in hope no matter how dark the outlook…. this is what I want for my girls…. and to realise how loved and phenomial or as the girls say phenominis they are… and as are all of you…. until next time… just keep swimming